I grew up in Barnton Park down the road from Sarah Boyack, now Member of the Scottish Parliament, in Edinburgh. Sarah, I'm sure, will join me in remembering a childhood spent riding bikes with her friends and taking long walks exploring the not-yet-developed fields that surrounded the estate and to Cramond, where the beach was sandy, not strewn with grasses as now, and the river Almond was a great attraction for walking precariously on stepping stones and where we could sail in a rickety ferry to Dalmeny to walk for miles. All in all, a very active childhood. In my twenties I continued to be active, canoeing, as I've written about, at Craiglockhart Sport Centre and down Scottish rivers and, rather less successfully, in the canoe polo squad. Then I got ME/CFS.
That was in the mid 80s. I know now it is called ME/CFS because i was given the diagnosis over 20 years later in 2009 by an infectious diseases Consultant then again in 2013 by a Neurologist.
Over the last couple of months I've started reading about ME and have learnt how people generally, but mostly the medical profession view the illness. I've taken it all on board with surprise and at times a stirring of anger. Yesterday I opened a document with a quote that stirred me to more than anger. I tend not to be an angry person but to think logically about what can be done to sort a situation. But I am struck by how utterly hopeless people with ME feel. Reading in the space of a few weeks about 30+ years of misdiagnosis, neglect and in a few cases what seems nothing less than abuse I am left with a sense of hopelessness.
However, I will stay true to myself and not start to feel hopeless or angry. What is there to do to sort the situ? What in fact was the quote that made me so angry?
Sir Simon Wessely, Professor of Psychiatry, has promoted for decades that people with ME have a false illness belief (i.e. no illness at all) and therefore must be treated by psychological support and encouraged to increase exercise, in a gradual way, but it's a must to increase exercise (many patients report this has made them worse and it is implicated in at least one death). He has fed his belief into the DWP so denying people with ME benefits and pensions and generally sustaining the Yuppie Flu idea from the 80s to portray people with ME ... me in fact, as a malingerer (is this why the Occ. health doctor told me I had no rights?)
The anger-inducing quote* from Sir Wessely was ...
That was in the mid 80s. I know now it is called ME/CFS because i was given the diagnosis over 20 years later in 2009 by an infectious diseases Consultant then again in 2013 by a Neurologist.
Over the last couple of months I've started reading about ME and have learnt how people generally, but mostly the medical profession view the illness. I've taken it all on board with surprise and at times a stirring of anger. Yesterday I opened a document with a quote that stirred me to more than anger. I tend not to be an angry person but to think logically about what can be done to sort a situation. But I am struck by how utterly hopeless people with ME feel. Reading in the space of a few weeks about 30+ years of misdiagnosis, neglect and in a few cases what seems nothing less than abuse I am left with a sense of hopelessness.
However, I will stay true to myself and not start to feel hopeless or angry. What is there to do to sort the situ? What in fact was the quote that made me so angry?
Sir Simon Wessely, Professor of Psychiatry, has promoted for decades that people with ME have a false illness belief (i.e. no illness at all) and therefore must be treated by psychological support and encouraged to increase exercise, in a gradual way, but it's a must to increase exercise (many patients report this has made them worse and it is implicated in at least one death). He has fed his belief into the DWP so denying people with ME benefits and pensions and generally sustaining the Yuppie Flu idea from the 80s to portray people with ME ... me in fact, as a malingerer (is this why the Occ. health doctor told me I had no rights?)
The anger-inducing quote* from Sir Wessely was ...
"In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same...To the majority of observers, including most professionals, these symptoms are indeed all in the mind."
.... and I realise if I had lived in the 16th Century I'd have been burned at the stake as a witch!
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